Friday, June 20, 2014

Cardiac Catheterization Plans

Roscoe had another great day yesterday and we are thankful to report that it looks like wisdom has prevailed. We started off the day after some rough sleep in our "room" (aka: closet) which we'd slept in the night we got here. Thankfully, the view in the morning made up a little for the rough sleeping surface:
If Roscoe's life was an Agatha Christie novel then this sunrise would have been a foreshadowing of the good things to come and a depiction of the dawn of a new era for Roscoe's health, but it's not. It's just a sunrise. This was a coincidence that we noticed that made for a good blog introduction.

Roscoe spent the duration of Thursday on 50-55% oxygen and was very stable with no major desaturations, even during care times. They replaced his trach tube with a longer pediatric one to match his size, but with the same cuff and diameter as his previous tube. The nurse said that during the trach replacement he did great and didn't need any paralyzation or additional painkillers or sedatives. By comparison, last week on Thursday Roscoe was so unstable that when they suctioned his nose he would desaturate significantly to the point that nurses were nervous to even touch him to wipe his nose. This Thursday he had a team of people replacing a tube in his throat and he didn't have any real problems. Below is an x-ray showing his prior trach placement:

There was more benefit to this successful trach replacement than just having a happy baby. By undergoing stress and retaining his oxygen levels, Roscoe showed that he had improved his health over the past few days. The nurse even commented that she'd cared for him yesterday and that by comparison he was more stable and had less phlegm coming out of his lungs. By the way, "phlegm" is a great word to use when playing hangman.

The reason why this improved stability is important is that it effects Roscoe's cardiac catheterization plans. The purpose of a cardiac catheterization is for Dr. Moore to directly observe Roscoe's pulmonary hypertension and pulmonary vein stenosis during his normal state, to see how severe it is. Yesterday his heart echo (a rough estimation) showed the pulmonary vein stenosis to be worse than it was in January, so that concerned the pulmonary hypertension team (led by Dr. Fineman). The team of very educated experts was split between these two options:

  1. Do the cardiac catheterization now, because the heart echo and some reports seemed to indicate Roscoe was in a severe state of pulmonary hypertension (crisis).
  2. Wait several days to do the cardiac catheterization, because it looked like Roscoe was still dealing with the tail end of a sickness and that was effecting his pulmonary hypertension.
Roscoe's blood test results have not shown any evidence of infection, so aside from anecdotal evidence from the nurses, Alisha, and myself they would have no reason to believe Roscoe was sick:

Thankfully, after hearing about Roscoe's improved stability, the pulmonary hypertension team decided to wait. The reason why this decision was so important is that their findings during the cardiac catheterization would determine whether surgical repair, mechanical stenting, or just waiting for more growth would be the next step to treat Roscoe's pulmonary vein stenosis. If the vein gets stented, the stent will stay in for Roscoe's lifetime and no surgical repair will be possible. Stents in this situation have some effect, but are largely considered a lesser option to surgery if the patient is big enough for surgery. If the catheterization occurred during a time when Roscoe's condition was effected by a sickness, they would have been led to stent the vein prematurely. Though waiting means that Alisha and I will be at UCSF for longer than expected (at least through next week), we are thankful that they'll wait to observe Roscoe when he's back to his normal self.

In the meantime, they will continue to make attempts at weaning Roscoe from the nitric oxide. The first attempt wasn't successful, but since Roscoe still seems to be improving they will keep retrying. The reason that it's important to wean him is because our bodies produce nitric oxide naturally, and when it is unnaturally fed to us nitric oxide causes our bodies to stop producing it. This is similar to how taking synthetic testosterone will stop an athlete's body from naturally producing testosterone *cough .. Lance Armstrong ... cough*.

On Monday, UCSF will perform a lung scan (called a ventilation/perfusion scan) to get a more accurate picture of his lung function before the catheterization. To view his lung function, they'll inject a small amount of radioactive material into his bloodstream and then snap pictures as that radioactive material travels through his body. Based upon what they find, they will schedule the cardiac catheterization for later next week. UCSF didn't confirm yet whether this radioactive material would give him super-powers like Spiderman or Superman. If you haven't figured it out by now then you should know that God is all of the super-powers that Roscoe needs. 


  1. Praying for our God to heal this situation again you can all live and grow together♡ P.S. we have never seen explanations of medical scenarios that could be written in the medical journals corresponding with procesures! Aeesome job using all your strength and skills as witness of God's Super love and power!
    You two are amazing! Love, Ben n Lanai

  2. THREE are amazing♡

  3. I can't help but want to sing the following song thinking of Roscoe's health as the Boogie Man!

  4. Praise God!
    We'll keep on praying!

    (And yep - his bones are super cute!)

    PS - Want to play hangman? I have a special word I bet you'll NEVER guess. ;o)

  5. Still praying like crazy! Praise the Lord for his stability!! And hey, Dr. Fineman looks like Paul Simon, so that has to be a good sign, right?!? ;) Love you three!

  6. I was also admiring your son's cute little bones! Everything about Roscoe is interesting to me. Most interesting is his "super-powers"! I continue to pray for Roscoe to improve and be healthy enough for the three of you to finally go home together!

  7. Even Agatha Christie couldn't have written such an interesting & tale-twisting mystery! (Ex: Dottie, heliocoptor, worldwide fans & foretelling sunrises!)

  8. Shaun and Alisha, just hang in there. Thinking about how the world is watching.

  9. So happy to see the funny, silly Shaun back : ) I'm sure it's helping Alisha too. Thankful to read your post everyday and hear that Roscoe is doing better. We continue to lift you all up in our prayers several times a day, love you three! Moriah and the Herd..



  11. Still praying for you guys. Hope Roscoe does well next week!